[Copyright information: High-Functioning
Individuals with Autism, edited by Eric Schopler
and Gary B. Mesibov. Plenum Press, New York,
1992. Posted here with permission of Plenum
Press.]
Bridging the
Gaps: An InsideOut View of
Autism
(Or, Do You Know What I
Don't Know?)
Jim Sinclair
In May of 1989 I drove 1200 miles to attend the
tenth annual TEACCH conference, where I
learned that autistic people can't drive.
No, let's see if I can make that a little less
simplistic:
In May of 1989 I drove 1200 miles to attend the
tenth annual TEACCH conference, where I spent
two days among people who knew something
about what autism means. They didn't think
being autistic means being mentally retarded,
being emotionally disturbed, or being deliberately
obnoxious. They didn't think being spaced out
means not paying attention. They didn't think
an uneven performance means not trying. They
did know about spacing out, and about sensory
overload, and about not understanding things
other people take for granted. They had a
vocabulary for talking about my life.
And almost ten years after I struggled through
driver's training wondering what was wrong with
me that I had so much trouble learning to drive, I
learned there was an awful lot right with me that
I learned to drive at all.
I've been living with autism for 27 years. But I'm
just beginning to learn about what that means. I
grew up hearing the word but never knowing
what was behind it. My parents did not attend
programs to learn about autism, did not collect
literature to educate schools about autism, did not
explain, to me or to anyone else, why my world
was not the same one that normal people live in.
(Should parents tell their autistic children that
they are autistic? I think so. If the children
notice words at all, they already know the word is
being used about them. But be sure to tell them
what it means. I was told that it meant, among
other things, being dumb, crazy, malicious,
uncaring, and unmotivated.)
It wasn't so much new facts that I got from this
conference. It was new meanings and new
perspectives for understanding the facts. I heard
professionals describing problems autistic people
have, not problems autistic people are. I heard
parents recognizing their children's difficulties,
instead of casting themselves as victims of their
children's existence. I heard professionals
acknowledging their own limitations, without
blaming their clients when the help they have to
offer is not enough. I heard parents talking about
their own frustrations and disappointments,
without accusing their children of cheating them
by being what they are. Above all, I heard people
discussing autism in terms of not understanding,
rather than not caring.
I understand a lot about not understanding. I
usually understand when I don't understand
something, and I'm beginning to be able to
recognize gaps between what I actually
understand and what other people assume I
understand. Some of the missing connections
that I can finally name are funny, and some are
sad, and some are infuriating. I'm sure there are
many that I haven't noticed or that I don't have
words for yet. But here are some of the words
that I have found, and here are some of the gaps
that I hope they can help fill.
Being Autistic Does Not
Mean Being Mentally
Retarded
Being autistic does not mean being unable to
learn. But it does mean there are differences in
how learning happens. Input-output equipment
may work in non-standard ways. Connections
between different sensory modes or different
items of stored data may be atypical; processing
may be more narrowly or more broadly focused
than is considered normal. But what I think is
even more basic, and more frequently overlooked,
is that autism involves differences in what is
known without learning.
Simple, basic skills such as recognizing people
and things presuppose even simpler, more basic
skills such as knowing how to attach meaning to
visual stimuli. Understanding speech requires
knowing how to process sounds--which first
requires recognizing sounds as things that can be
processed, and recognizing processing as a way to
extract order from chaos. Producing speech (or
producing any other kind of motor behavior)
requires keeping track of all the body parts
involved, and coordinating all their
movements. Producing any behavior in response
to any perception requires monitoring and
coordinating all the inputs and outputs at once,
and doing it fast enough to keep up with changing
inputs that may call for changing outputs. Do
you have to remember to plug in your eyes in
order to make sense of what you're seeing? Do
you have to find your legs before you can
walk? Autistic children may be born not
knowing how to eat. Are these normally skills
that must be acquired through learning?
These are the gaps that I notice most often: gaps
between what is expected to be learned and what
is assumed to be already understood. Even when
I can point to the gap and ask for information
about what goes there, my questions are usually
ignored, treated as jokes, or met with incredulity,
suspicion, or hostility. I'm penalized for my
intelligence--people become impatient when I
don't understand things they think I'm "smart
enough" to know already or to figure out for
myself.
Being bright only means I'm good at learning; it
doesn't mean I know things without having to
learn them first. Figuring things out and finding
connections between different parts of a whole
are what I do best, and I get a lot of practice
because not many of the connections go into place
by themselves. But I still have to know what all
the parts are before I can find the connections
between them.
Assumptions that I know things which in fact I
don't understand often lead directly to
conclusions that I can't learn things which in fact
I already know. Such assumptions nearly led to
my being placed in an institution. Because I
didn't use speech to communicate until I was
twelve, there was considerable doubt about
whether I would ever be able to learn to function
independently. No one guessed how much I
understood, because I couldn't say what I
knew. And no one guessed the critical thing I
didn't know, the one missing connection that so
much else depended on: I didn't communicate by
talking, not because I was incapable of learning to
use language, but because I simply didn't know
that that was what talking was for. Learning how
to talk follows from knowing why to talk--and
until I learned that words have meanings, there
was no reason to go to the trouble of learning to
pronounce them as sounds. Speech therapy was
just a lot of meaningless drills in repeating
meaningless sounds for incomprehensible
reasons. I had no idea that this could be a way to
exchange meaning with other minds.
Not all the gaps are caused by my failure to share
other people's unthinking assumptions. Other
people's failure to question their assumptions
creates at least as many barriers to
understanding. The most damaging assumptions,
the causes of the most painful misunderstandings,
are the same now as they were when I was a child
who couldn't talk, a teenager who couldn't drive,
and a college student who couldn't get a job:
assumptions that I understand what is expected
of me, that I know how to do it, and that I fail to
perform as expected out of deliberate spite or
unconscious hostility.
Other people's assumptions are usually much
more resistant to learning than my ignorance. As
a graduate student I encountered these
assumptions in employers who had extensive
backgrounds in special education. Presumably
these people (one of whom was the director of a
university affiliated facility) had access to up-to-
date information about developmental
disabilities. But they never bothered to apply
that information to the things they "knew"
without thinking, and the things they expected me
to know without learning.
At the same time I had a friend--not a parent
driven by love and obligation to want to reach
me, not a professional who made a career of
studying my condition, but just someone who
thought I was interesting enough to want to get to
know better--I had a friend who, with no formal
background in psychology or special education,
figured out for herself some guidelines for
relating to me. She told me what they were:
never to assume without asking that I thought,
felt, or understood anything merely because she
would have such thoughts, feelings, or
understanding in connection with my
circumstances or behavior; and never to assume
without asking that I didn't think, feel, or
understand anything merely because I was not
acting the way she would act in connection with
such thoughts, feelings, or understanding. In
other words, she learned to ask instead of trying
to guess.
Are these really such difficult ideas to grasp? Are
there people who are so certain they know
without learning what other people are inside
that they can't learn to understand anyone who
isn't like them? Is that what it means to have
"empathy"?
Being Autistic Does Not
Mean Being Emotionally
Disturbed
Not all the gaps involve facts and ideas. A woman
at the conference wondered how she could help
her autistic daughter to be able to talk about her
feelings. I asked if she had ever tried to teach her
daughter what feeling-words mean. Did she talk
to her daughter about her own feelings? Did she
describe what the feelings felt like, instead of just
naming them? There's a difference between
being aware of one's feelings and knowing what
the feelings are called. There's also a difference
between having feelings and having automatic
connections between feelings and expressions.
When I was growing up autism was considered
an emotional disorder. I spent most of my
childhood in one or another type of
psychotherapy with therapists who started with
the assumption that I knew what the words
meant, but didn't know how to monitor my own
processing. Their interventions primarily
consisted of coaching me to say things I did not
feel, and of telling me (and telling my parents)
that I was behaving strangely because of various
bizarre emotional conflicts that the therapists
earnestly wished to work through with me.
If I said that wasn't how I felt, especially if I
didn't know words to describe how I did feel, I
was told (and my parents were told, of course)
that I was resisting therapy and did not want to
get well. If I obediently repeated the words and
remained autistic anyway, I was told that I still
wasn't being open enough with my
feelings. Occasionally, under extreme
circumstances such as the time I broke a bone, I
was able to attach words to a subjective
experience and make a simple statement such as
"my foot hurts." Even when I could find words,
no one believed me. I was told that I was only
pretending to feel pain, fear, confusion, or
whatever I was reporting because I really felt
whatever the therapist's preferred theory
predicted I should feel.
And through all this condescending concern
about feelings and emotional issues, no one ever
bothered to explain to me what the words
meant! No one ever told me that they expected to
see feelings on my face, or that it confused them
when I used words without showing
corresponding expressions. No one explained
what the signals were or how to use them. They
simply assumed that if they could not see my
feelings, I could not feel them. I think this shows
a serious lack of perspective-taking!
I finally started learning to talk about feelings
when I was twenty-five. I knew someone then
who taught me a vocabulary. She didn't know
that was what she was doing. She didn't do it
because she wanted to help an autistic person
learn to "deal with" feelings. She just happened
to be someone who talked a lot about her own
feelings. She identified what each feeling was
called, and where she felt it, and how it felt, and
what her face and body were doing about
it. When I asked questions about what the words
meant, she explained. When she asked questions
about my feelings, and I asked for clearer
definitions of what she was asking, she clarified
the questions until I could answer them. That's
all it took to get started; once I realized that
words could be used for subjective experiences
too, I took off again the way I did with idea-words
when I was twelve.
A professional at the conference remarked that
therapy with an autistic person is educational
therapy, not psychotherapy. Call it educational
therapy, interaction therapy, common-senseexplanation therapy--or just call it honest and
direct communication. Whatever you call it, a
few months of informal, amateur, even accidental
non-psychotherapy did more for my ability to
express feelings than decades of professional
doubletalk. If professionals are to be more
helpful than casual friends, they should be more
objective than lay people, more willing to explain,
less eager to jump to conclusions, more open to
questioning their own beliefs.
Assumptions about emotions cause the most
impenetrable barriers to understanding, the most
devastating damage to relationships, the most
harmful interventions, the most irreversible
oversights: assumptions that I don't have, don't
understand, or can't control my own desires and
motivations; that comprehension or
communication problems stem from my own
conscious or unconscious choices to sabotage
functions that would be intact if I truly wanted to
use them; that if I fail it's because I don't care
enough to succeed; that if I finally succeed, it's
because I knew how to do it all along. I've read a
lot about how psychodynamic theories blame and
harm parents by attributing autism to emotional
disturbance. They don't harm the parents nearly
as much as they harm the victim when they say a
child chooses to be autistic.
The results of these assumptions are often subtle,
but they're pervasive and pernicious: I am not
taken seriously. My credibility is suspect. My
understanding of myself is not considered to be
valid, and my perceptions of events are not
considered to be based in reality. My rationality
is questioned because, regardless of intellect, I
still appear odd. My ability to make reasonable
decisions, based on my own carefully reasoned
priorities, is doubted because I don't make the
same decisions that people with different
priorities would make. I'm accused of being
deliberately obtuse because people who
understand the things I don't understand can't
understand how anyone can possibly not
understand them. (That sentence makes perfect
sense. If you have to work a little bit to process it,
you may get a slight taste of what it's like to have
a language processing problem.) My greatest
difficulties are minimized, and my greatest
strengths are invalidated.
I have an interface problem, not a core processing
problem. I can't always keep track of what's
happening outside myself, but I'm never out of
touch with my core. Even at worst, when I can't
focus and I can't find my body and I can't
connect to space or time, I still have my own
self. That's how I survive and how I keep
growing.
I taught myself to read at three, and I had to
learn it again at ten, and yet again at seventeen,
and at twenty-one, and at twenty-six. The words
that it took me twelve years to find have been lost
again, and regained, and lost, and still have not
come all the way back to where I can be
reasonably confident they'll be there when I need
them. It wasn't enough to figure out just once
how to keep track of my eyes and ears and hands
and feet all at the same time; I've lost track of
them and had to find them over and over again.
But I have found them again. The terror is never
complete, and I'm never completely lost in the
fog, and I always know that even if it takes
forever, I will find the connections and put them
back together again. I know this because I'm
always connected at the core and I never lose
track of my own self. This is all I have that I can
always count on, all I have that is truly my
own. And this is what is denied when I'm told
that I bring problems on myself because I'm not
stable at the core.
Being Autistic Does Not
Mean Being Uncaring
There are other gaps that I'm just beginning to
notice, and other assumptions that I'm just
beginning to explore. They have to do with
interpersonal rather than intrapersonal
processing. The assumptions are similar: that I
have the same needs for relationships that other
people have, that I know how to relate in ways
that are considered normal, and that I don't
relate normally because I have negative or
uncaring attitudes toward other people.
As with other activities I've mentioned, social
interactions involve things that most people know
without having to learn them. At the conference I
met some other autistic people and gained a new
insight into how non-autistic people
think. During the Thursday evening workshop
sessions, a room was set aside for autistic people
to meet informally in an unstructured
setting. Four of us were left alone
together. Within a few minutes, one person was
rambling without enough focus, one was
obsessing on a too-narrow focus, and I was
having trouble keeping track of both of them at
once. The fourth person in the room was
invisible. That was interesting to watch; I know
I'm invisible sometimes, but I'd never seen how it
looks from outside.
After a while some other people came in to see
what autistic people talk about, and they started
asking questions that gave some structure to the
conversation. Then some interesting things came
out. I even heard the invisible person talk. While
I could guess how odd he must have looked and
sounded to people who are always connected to
their bodies, it was exciting to see him putting his
verbal mode on-line, to hear how far from his
voice he was, and to be able to recognize the kinds
of bridges he was building, because they were the
same kinds of bridges I build myself. I build
them over and over again every day, and no one
ever notices unless I slip, but I noticed when I saw
someone else building them.
All this happened because some people who
weren't autistic came in and asked questions. A
computer--or an autistic person--might have
predicted what would happen if people who were
all impaired in their abilities to communicate and
converse were left together with no
direction. (This autistic person did predict it, and
still didn't know what to do about it.) This was a
beautiful demonstration of the assumption that
human beings, especially human beings who have
significant things in common, will communicate
and converse if given an opportunity, without
needing any direction.
I don't know how to do that. I don't even know
when I should be trying to do it. People seem to
expect me to notice them and relate to them no
matter who they are, just because they happen to
be there. But if I don't know who people are, I
don't know how (or why) to talk to them. I don't
have much of a sense of people-in-general as
things to be involved with. And I don't know how
to have prefabricated relationships; if I happen to
be involved with some person-in-particular, I
practically have to learn to talk all over again to
develop a common language with that person.
That doesn't necessarily mean I don't
care. Sometimes I'm not aware of social cues
because of the same perceptual problems that
affect my understanding of other aspects of the
environment. My visual processing problems are
no more the result of indifference than blindness
is--are blind people considered insensitive if they
fail to recognize people or to respond to others'
facial expressions? Sometimes I notice the cues
but I don't know what they mean. I have to
develop a separate translation code for every
person I meet--does it indicate an uncooperative
attitude if someone doesn't understand
information conveyed in a foreign
language? Even if I can tell what the cues mean,
I may not know what to do about them. The first
time I ever realized that someone needed to be
touched was during an encounter with a griefstricken, hysterically sobbing person who was in
no condition to respond to my questions about
what I should do to help. I could certainly tell
that he was upset. I could even figure out that
there was something I could do that would be
better than doing nothing. But I didn't know
what that something was. It's very insulting, and
also very discouraging, to be told that if I don't
understand someone, it's because I don't care.
Sometimes, though, I'm really not interested. I'm
not interested in relationships-in-general, or in
people-as-groups. I can be very interested in
individuals once I've met them, but I don't feel a
need to have relationships in the absence of
specific people to relate to. During school breaks
I can go for days or weeks without any personal
contact with other human beings, and I may get
bored, but I don't get lonely. I don't need social
contact. And because I don't need it, I have no
compelling reason to go out of my way to get
it. Mere proximity is no reason for me to become
emotionally attached to anyone who isn't
interesting to me as a person. Even when
someone does attract my interest, when I do
become emotionally attached and desire a
relationship with that person, I don't become
dependent on the relationship or on the person. I
don't need them.
But wait. Because I don't need other people in
my life, I'm free, as non-autistic people can never
be free, to want other people in my life. Because I
don't need relationships with anyone, I'm free to
choose a relationship with a someone--not
because I need a relationship, but because I like
that person. When I make contact with someone,
it's special--and not just because a lot of time and
effort have gone into producing a response that's
a pale imitation of normal social responses. Pale
imitations of normalcy aren't worth any of my
time and effort at all. When I make a connection
it's special because I don't have to do it, but I
choose to do it. It's special because I don't
generalize very well from one person to another,
so everything I do is intensely focused on just that
one person. It's special because, having no idea of
what's normal and little talent for imitation, I
have created something entirely new for that
person and that occasion. It's special because I
don't know how to take people for granted, so
when I'm relating to someone, that person is the
most important thing in my world for the
duration of the contact.
But I don't stick. That confuses people
sometimes. A friend once asked me for assurance
that I really wanted to be together. I answered,
"I can leave and be just fine, or I can stay and be
even better." Isn't it enough to be just fine on my
own, and to be able to choose connections that
will make my life even better? I have exactly as
many relationships as I want. I relate only as
myself, only in ways that are authentic to me. I
value people only as themselves, not for their
roles or status, and not because I need someone to
fill empty spaces in my life. Are these the severe
deficits in communicating and relating that I keep
reading about?
Actually, there are some pretty serious deficits,
but not in my ability to care. There are deficits in
my ability to recognize people who aren't able to
care, people who aren't authentic, who don't
value me as myself, or who aren't connected at
their own cores. It's hard for me to tell when
someone is lying. It took me a very long time, and
a lot of painful experience, just to learn what
lying is. And in the social area, as with
everything else, I have trouble keeping track of
everything that's happening at one time. I have
to learn things other people never think about. I
have to use cognitive strategies to make up for
some basic instincts that I don't have. In the
social area, as with everything else, there are a lot
of things that I don't understand unless someone
explains them to me.
That's a special problem in the social area,
because one of the things I need help with is
deciding whose explanations and advice to
accept. Mentors are supposed to be of critical
importance to autistic people's successful
functioning. A few years ago, when I was just
beginning to explore the idea of making
connections with other people, I met someone
who offered to teach me what I needed to
know. He was a doctoral student in special
education who worked with developmentally
disabled people in a number of community
programs. He was warm and gentle and
supportive--at least at first. He said he wanted
me to be his little brother. He abused me,
mentally, emotionally, and sexually. He told me it
was my fault. When I told his faculty adviser
about it, the professor said that this was
friendship, that it was something I needed. What
was I supposed to learn from this?
I did learn a lot from it. I learned about lies. I
learned about betrayal, almost before I learned
about trust. I learned about some feelings that
are more typical of child abuse and incest: I was
just beginning to be aware of things--about
relationships, about touching, about trust--that
normal babies are born knowing, and he hurt me
in ways I could never be hurt as a child, because I
never trusted anyone that way when I was a
child. I even learned about friendship, by
learning about a lot of things that friendship is
not.
But probably the most important thing I learned
from it was that I am capable of making
authentic connections, even if he wasn't. That's a
good thing to know. Since then I've learned a lot
more about how I can make connections, and
about what kinds of people I want to make
connections with. The future should be
interesting.
Being Autistic Will Always
Mean Being Different
After reading Temple Grandin's autobiography,
someone once asked me if I thought a cattle chute
would have helped me. I said I didn't need a
cattle chute, I needed an orientation manual for
extraterrestrials. Being autistic does not mean
being inhuman. But it does mean being alien. It
means that what is normal for other people is not
normal for me, and what is normal for me is not
normal for other people. In some ways I am
terribly ill-equipped to survive in this world, like
an extraterrestrial stranded without an
orientation manual.
But my personhood is intact. My selfhood is
undamaged. I find great value and meaning in
my life, and I have no wish to be cured of being
myself. If you would help me, don't try to change
me to fit your world. Don't try to confine me to
some tiny part of the world that you can change
to fit me. Grant me the dignity of meeting me on
my own terms--recognize that we are equally
alien to each other, that my ways of being are not
merely damaged versions of yours. Question
your assumptions. Define your terms. Work
with me to build more bridges between us.
Reference
Grandin, T., & Scariano, M. Emergence labelled
autistic. Novato, California: Arena Press, 1986.
Click here to return to the main page